Feud Over Best Setting for the Disabled

Justice Department Suit Against Arkansas Stirs Debate Over Housing People in Big Institutions Versus Small Group Homes

By

Anna Wilde Mathews

Updated Jan. 24, 2011 12:01 a.m. ET

The Justice Department in a lawsuit against Arkansas is reigniting an emotional fight over the role of residential institutions for people with disabilities.

The suit focuses on one of Arkansas's facilities for people with severe disabilities, the Conway Human Development Center. The state-run institution houses around 510 people off all ages, including children, who typically have intellectual disabilities as well as conditions such as cerebral palsy and physical handicaps.

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A federal suit criticizes the Conway Human Development Center, but the home has defenders in some residents' relatives, including Rita Hoover, left, walking with her son, Timothy, at Conway.
Dero Sanford for the Wall Street Journal

The suit claims residents aren't being given enough of a chance to move to less-restrictive community settings—such as group homes or family dwellings with professional assistance—and alleges dangerous practices. Conway residents are generally placed in the center by their families, with the exception of a few who are wards of the state, such as children in foster care.

The Justice Department has found itself squaring off not only against the state government, but also against well-organized and vocal groups representing families of residents of state-run institutions. They have prodded state officials to defend the facilities and intervened in the case with a brief defending Conway.

Larry Taylor, whose 58-year-old sister Cornelia has lived at Conway since the age of 14, says he would never want to move her. His sister has intellectual disabilities and suffers from seizures. The Justice suit doesn't ask for Conway to be closed, but Mr. Taylor says he believes that is the goal. He points to a recent settlement the department reached in Georgia, under which the state agreed to try to move all people with developmental disabilities out of state-run hospitals by 2015, and set up new community-based services.

"I see the Department of Justice coming in and wanting to rip Cornelia out of her home," says Mr. Taylor, a Little Rock mortgage banker who is president of Families and Friends of Care Facilities Residents, a statewide group.

The battle in Arkansas reflects the re-emergence of an issue that has lingered for decades. The number of individuals living in state institutions—defined as those with at least 16 residents—for people with intellectual disabilities has dwindled to 33,682 in 2009 from 84,239 in 1990, according to Charlie Lakin, director of the Research and Training Center on Community Living at the University of Minnesota. This is happening as institutions have been shrinking and closing, replaced by community-based options.

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Ms. Hoover with her son, Timothy at Human Development Center in Conway.
Dero Sanford for The Wall Street Journal

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Mr. Hoover's bedtime.
Dero Sanford for the Wall Street Journal

Mr. Lakin says repeated studies have shown that people who leave institutions and get community-based care have improved outcomes, including better life skills. Eleven states no longer have such facilities.

A few states, such as Arkansas, have maintained extensive networks of centers. Under the Obama administration, the Justice Department's Civil Rights Division has ramped up efforts to push for deinstitutionalization of disabled people who are deemed able to live outside, enforcing a 1999 Supreme Court decision that rested on the Americans with Disabilities Act.

"It is fiscally prudent, legally sound and consistent with our moral compact to ensure that we are providing choice and opportunity for people to live in the community," says Thomas E. Perez, assistant attorney general for the Civil Rights Division. Mr. Perez says for Arkansas families who prefer an institution and are backed by a medical expert, "there will be an institutional option."

He points to the Georgia settlement as a model for Arkansas. That settlement said people with disabilities shouldn't be placed in any living situation unless it was consistent with their informed choice.

The case about Arkansas's Conway, a sprawling complex opened in 1959, was originally brought by the Bush administration in January 2009. Last May, the Justice Department filed a second suit focused on the state's entire system for caring for people with disabilities. A federal district court judge in Little Rock may rule on the Conway case in the first half of 2011.

At Conway, the Justice Department has alleged that staff excessively used physical restraints that immobilized residents when the devices weren't justified. Justice-hired experts argued that medical care at Conway is dangerously subpar. Staff sometimes failed to recognize or treat drug side effects, resulting in the 2007 death of a man and two more recent near-fatal incidents, including one involving an 8-year-old, the filings said.

More broadly, the federal lawyers claimed that the center and the state do little to help residents move out of Conway, violating their rights. In one brief, they said Conway has a "pervasive institutional bias" against efforts at community integration.

Thomas B. York, the lead attorney for the state, says Conway is "an excellent facility" with "high standards and high quality of services." The three serious drug-reaction cases were "very isolated" and the care provided was appropriate, he says. Conway's use of restraints is limited and safe, and has been dropping, he says.

Mr. York says Conway does work to evaluate whether residents could live in community settings and offer them such options.

Though the state has a long waiting list for community placements, a report from a state-hired expert said when residents move out they get priority in accessing the community options and very few seek to leave Conway. The report said a 2008 survey of families of residents found 97% of respondents were "satisfied" or "very satisfied" with care at the facility.

The president of the Conway Human Development Center Parents' Association, Rita Hoover, says she thinks a live-in facility with constant supervision is the best option for her 34-year-old son, Timothy, who has severe intellectual disabilities and can fly into rages during which he injures himself.

At Conway, where she says she visits her son frequently, he "feels safe and is safe," says Ms. Hoover, a paralegal who lives in Maumelle, Ark.

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